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Thursday, September 12, 2013

When the kids came for their visit, they were shocked to find me with no bassinet in my room. The Professor (aged 10) came up with a shaky solution. "The baby must be in the nursery, right Mommy?" The Princess (aged 8) disagreed "Our babies always stay in Mommy's room with her - they don't go to the nursery." Sporty, (aged 6) just wanted to hold his baby already, so get it quick from wherever you've hidden it. Big Boy (aged 2) and Careful (aged 4) just wanted to hug their Mommy. They were more than happy to see me without a new baby.

Kids, I explained, Our Baby is not here. Our Baby is not in the nursery either. In fact, our Baby is in a separate part of the hospital. You know how a Mommy has to stay in the hospital for a few days after getting a new Baby, so we can make sure the baby is healthy before going home? I waited for them to nod their understanding and continued. Well, G-d made a surprise in our Baby. He looks just like you do - he has Princess's beautiful reddish hair, Sporty's upturned nose, Careful's mouth and chin, and Professors eyes. We all know that nobody looks quite like Big Boy. But our Baby cannot go to the bathroom like you do - he cannot even use a diaper like Big Boy does. Inside, he has a tube - just like we all do - leading from his tummy to his bottom, to take the dirty stuff out. Only, his tube doesn't go to his bottom, it got a little mixed up inside. So, he's in a special part of the hospital where he can be watched really well and he had an operation. Now the dirty stuff comes out from a special hole in his tummy. Because he had an operation, he can get sick much more easily,so they don't want him to have too many visitors while he's in the special part of the hospital. Can you wait to meet him on Monday, when he comes home?

They were OK with waiting (phew!) but were concerned I would have to stay that long too. I was flattered to be missed, and reassured them that the hospital doesn't let Mommies stay once they know how to take care of the baby, so I would be coming home Saturday night.

That was a lot easier than I expected, and the kids took it all in calmly. I wish I could say the same for Daddy and myself!

Wednesday, September 11, 2013

After the colostomy surgery, Dr. B came down to give his what to expect probabilities and possibilities speech. As Baby had been under general anesthesia, he was also "intubated" - he was helped to breathe. The tube would stay in until Baby was breathing on his own. Being the big fighter that he is (an important thing when you are child number six in a family of boys!) Baby was preparing to do so as we spoke. If we didn't rush to meet Baby in the NICU, we would miss the chance to see him with the ventilator. We risked that, and when I next saw baby he was only hooked up to the same mass of wiring he'd had before the surgery.
I noticed that the IV fluid was a different color, and asked our nurse what that meant. She told me that with an open exit route, Baby was now ready for "food" and was receiving it via the IV. We were waiting to see what output there would be before the go-ahead to feed him by bottle would come. Once we established the ins and outs were consistent and healthy, I would be able to sit and feed Baby. The doctors were set to determine a go home day based on Baby's performance. Come on Baby, I cheered, you can do it!
The next morning, which was a Friday, Dr.B left word with our nurse (they keep changing on me - I rarely see the same face twice) that as far as healing from surgery went, Baby could be discharged on Monday. Yippee! Don't get me wrong - everyone worked to make our stay in hospital as nice as possible. It's just not possible to feel at home in that environment is all.
Daddy and I discussed the pros and cons of having our troop of big ones visit with Baby. We decided to follow their lead: we would tell them the basics of what was going on, packaged in child friendly language, and gauge their reaction. If they were OK with waiting to meet their newest brother, as we hoped they would be, we would skip visiting the NICU. Otherwise, we would contact Dr.K's office to get their immunization records and take them up one at time following NICU rules. We further decided to tell all the kids at once, face-to-face when they came to visit me on Friday afternoon.
Ms. H, our social worker, set up a team meeting for us, which would take place in my room while Daddy and the kids were visiting. This way, Daddy and I could hear everything straight from the horses mouth, and could air our questions and concerns about caring for Baby's ostomy.
Daddy brought the crew and a picnic lunch for them, which was serendipitous, as my hospital lunch tray arrived just as they did. Suffice it to say my stuff was more interesting than sandwiches and cookies, so I shared. Once lunch was finished and cleaned up, I vacated my bed and the kids got comfy. As we live in an ancient civilization, we have no TV at home. So it has become a new baby ritual in our family to be treated to a show in Mommy's hospital room. Once the kids were ensconced on the bed and were done riding it up and down, I picked a kid friendly channel and watched their eyes glaze over.
We had our meeting with Ms. H and the Drs and Nurses with not a peep from the five kids in the room.

Tuesday, September 10, 2013

When I close my eyes and lean back, I can imagine I'm sitting on the way-too-comfy couch at home, the familiar heft of a baby in the crook of my elbow. Baby wiggles deeper into the hug, and I open my eyes to look down at him. No, we're still in the alien world of the NICU. Still being waited on by nursing staff. I'm glad that they let me hold this beautiful bundle of wonder. Did I just write that? How unnatural for a mother to need "permission" to hold her own son. And now that I am holding him, they buzz around me like so many busy bees on a warm summers' eve, the jailers of my Baby.

Stop. I must remember they are NOT the enemy. They are blessed by G-d to help others. To help us.

At this point in our story, things get a little hazy: did I head back to my ward and call Daddy with an update first, or did I speak with the speak with the surgeon first?

Loyal readers, I will tell it as I recall it, if not exactly as it happened. Bear with me - we soon get to more recent events, still crystal clear, and less clouded by the lack of brain birth brings on.

Baby was happily sleeping, and I was falling asleep too, jerking awake every few minutes in a chair made for sitting. Can you believe they had no chair to sleep in at Baby's bedside? At one point, I gave it up, and left Baby for the (slightly) more comfortable confines of my own bed. I was not given the chance for sleep (oh no, what with vital signs to check and stool softeners to administer, the staff just had to wake me ever hour or so). At some point in this half sleep, Dr. K our familiar pediatrician showed up with Dr. B, an unfamiliar chief of pediatric surgery. They were also accompanied by an RN on Dr. B's staff whose name eludes me now. I use only the doctors' initials to protect the innocents involved.

Dr. K in his usual long winded, thinking as he speaks manner put me at ease with his assertion that Baby seems healthy in the usual Baby way. Then Dr. K. launched into his plan of action. Baby would be needing three surgeries just to correct the presenting ARM. Surgery Number One, which needs to be preformed post-haste would separate Baby's colon into upper and lower segments.The upper would end in a bump protruding from Baby's lower tummy (surgeon's wording here, hope y'all can follow!). That is where Baby would pass stool from. Once that surgery is shown successful, Baby can be fed.

I stopped listening at that point, deciding it best to take this all in step by step. Step one: check out baby for other often related complications. Step two: Surgery Number One. Step three: feed the baby, change the baby, turn the baby over. Step four: well, that's enough to digest just now.

We waited with baited breath for test results to come in ruling out any other issues. Kidneys, check. Heart, check. Liver,Stomach,Small Intestines, check,check,check. Scans of the spine and pelvis. Bloodwork. and more bloodwork to double up on some suspicious results.

A friendly gastroenterologist, helping us navigate the muddy waters of medicalese summed the situation up: "What it all boils down to is a bit of plumbing." Thank G-d no other organs were affected. No syndromes present. A healthy baby, as Dr. K said, with a "fixable problem" Dr. B added.

And so, less than twenty four hours old, our Baby was wheeled to surgery. Daddy and I sat in my room and prayed.

Sunday, September 8, 2013

Baby is in the NICU, all alone. Well, technically he is surrounded by an alphabet soup of competent care. RNs, MDs, FACSs, PEDs and more, in my mind's eye leaning over poking and prodding my little one. But he is alone - I'm a whole floor and half a wing away, and Daddy is at home with our other five charges. I don't want to wake him - my news will keep. Meanwhile, while I know that Baby is being cared for I wonder if anyone is holding him, singing to him.

I, the veteran of instant Skin-to-Skin, kangaroo care, feed-your-new-baby-as-soon-as-he-wants births, miss my Baby. We have been together through everything from mealtime to nap time these past months, and being separated this way is weird. I cannot visit with Baby until my own Nurse clears me to be off my goody bag - an IV of fluids to ward off dehydration. I've been told most mothers come in for birth somewhat dehydrated, so it's standard procedure this IV. I watch the pale golden liquid drip, drip, drip into the tube snaking out of my arm. I vaguely wonder what Baby's condition will mean in our day to day life. I try to think up intelligent questions to ask the doctors, realizing as I come up with a handful that they have already answered them.

I know what's "wrong" with my Baby (wrong? with the way G-d in His wisdom made this baby?) and what steps we have to take to figure out how to fix it. And, once we've tested everything from his head to his toes and know what other complications we are dealing with, I know what possible steps we will have to take. All of them include surgery. None of them include taking him home when I am discharged. I thank G-d the hospital is practically in our back yard.

I am not worried, which surprises me a bit.

Finally, I am untethered. I stretch a bit, stand slowly, and prepare to be wheeled upstairs. I ask the Nurse where the wheelchair is, receiving only a blank look. I explain slowly that I am supposed to go see my baby now, she tells me to get back into bed, she will see what's what. After five million fidgety minutes - or maybe it was only five minutes, who can remember?-Nurse returns. We cannot go up to Baby until they have him firmly installed in the NICU. I see that it's getting late in the morning, and call Daddy to let him know what's going on. I cannot answer his barrage of questions, mostly because I am still waiting to go to Baby and see for myself what they are doing to him. So we wait, with me thinking how ridiculous this is. What do they think I'm going to do - grab the baby and run?

Monday, September 2, 2013

After nine months building anticipation, we were eager to meet child number six. Having lots of practice at this parenting thing, we were calm in the face of the impending new baby onslaught (think diapers, colic, spit up, nights and nights of no sleep). Ahhh, ignorance was bliss.
Before y'all go thinking this is just another birth story . . . we'll fast forward to the excitement. Our perfect little one, whose features and coloring were a great mix of his older brothers and sister, had the requisite 10 fingers and ten toes. He had a cute upturned nose, and typical overgrown belly button. His eyes were open, and he cuddled himself deeper in my arms as I checked these features off.
A few hours later, Baby was taken to the nursery for a bath and a heel stick. A team of doctors came into my room to update me on Baby. Um, hello? Kid number six, number three in this particular hospital, and I'd never had so much as a doctor come in to say "Hi!" So you know someone's reading the script wrong here.
Turns out I was the one with the wrong lines. Our baby did indeed like being the center of attention, and needed a team of doctors on his side. As the doctors explained, Baby's form was as imperfect as my inspection of him must have been.
The doctors threw some words at me -imperforate anus, bowel obstruction, colon, colostomy. As far as I knew, they were speaking Latin. Like the good shell-shocked parent that I was, I kept quiet and listened to their attempts at explaining in the English language. Basically, our little guy had no way to- in their highly educated terminology- poop. No egress whatsoever for the icky stuff. In fact, his "pipe" didn't make it down anywhere near the skin.
" So, Mom, we've moved him to the Neonatal Intensive Care Unit, and are preparing him for surgery, any questions?"